Does anyone else here who has both fibro and Raynaud's find that their Raynaud's gets worse during and after a flair? Or is it just me?
Had a horrid fibro flare a few weeks ago and my body is just beginning to settle back down but Raynaud's is still flaring up (even though it's milder here than it has been for a while) So I'm used to getting Raynaud's in winter but never have before in Spring so wondering if it's connected to the flair?
Does anyone here in this group suffer with Raynauds, whether it be raynaud's phenomena or 2nd being caused by an autoimmune illness? to me it winds up being the same thing, VERY numb, tingly, painful fingers and feet.
Mine started in 1998 when I was just going through my divorce. So you can imagine the years I've gone through trying different gloves and doubling up on pairs of socks. which means I can't dress with nice dress boots with 2 to 3 pairs of socks on. can't fit them in.. lol
I just did a search to see if they make special gloves and socks for people with this problem.
well was I surprised when multiple sites came up.
I don't know who to believe or trust for this matter. greedy companies will take advantage of people who need a special product and you wind up paying way too much for a product that winds up not working.
so I'm trying to find out on this board if ANYONE can recommend to me what gloves and socks worked the best for you.
I have very limited income and therefore want to make sure I don't get ripped off.
The heater in my car has been broken for years now. The car was given to us by my mother in law. she had it fixed once but broke soon after. I can't afford to get it fixed, so I just layer on my clothing, put a crocheted blanket on my lap, and look ridiculous. So far, no gloves, mittens or socks work!
In august i noticed my hand went very red, and became itchy and swollen then burned after holding a container of ice cream, long story short, my ears, feet and lips are affected after testing. my fingers don't go white or blue, just red. now yesterday it was 9 celsius or 48.2 F and windy , my chest,neck and face was red and itchy on the bus when i started to warm up. when i got home the back of my legs started. is this raynaud's or cold urticaria or something else? i am 50 years old and have had allergies all my life, animals,nature, but nothing like this. up until yesterday, i was thinking raynauds, i went for a blood test last week for lupus cause a lot online said you could have something else.
View 3 RepliesI was diagnosed with Hashimoto's postpartum about a year ago. I was complaining of excessive fatigue/inability to return to running, and pretty bad carpal tunnel. At the time my TSH was 6.893 and Free T3 282.1 pg/dL [230-420] and of course high antibodies. My primary care put me on NatureThroid 32.5mg (25 mcg T4/T3). I felt better within the week and my carpal tunnel completely resolved in about 2 weeks. I felt great on this for a year. I had my TSH tested once during this time and it came to 2.785. I trained for a 50 mile race, including hard training with back to back long runs on the weekend. I then started training for a marathon in January with a goal time of 3:15-3:20. I was training hard but felt great. I did a half marathon March 20th at a 7:04min/mile pace. I felt on top of the world and was on track to run what I had termed my "comeback marathon". The next week I still felt good, but then the following week I came down with a minor respiratory tract infection. I was completely better in 3 days and just thought it was a small blip. I went out for a long run that weekend and felt good for the first 6 miles, and then got progressively worse and felt like I had no energy, completely flat, defeated. It was not normal but I just chalked it up to a bad run. The following week, I had a strange inexplicable flair of wrist pain/carpal tunnel for about 3 days, but then that resolved, so again I kind of dismissed it. I was able to do my weekly workouts and hit my paces although they did feel a little bit harder than normal. But every time I tried to do a long run, I crashed after just a few miles and finished feeling like complete crap. I started to get worried about my race but again just figured I needed a good taper and I would feel better. Well, my race came it was one of the worst experiences of my life. I ran the first half at my goal pace but after 8-10 miles I started feeling sort of ill, dizzy, and had no energy. Again, I have run several marathons and have had bad marathons, and this was above and beyond anything I'd ever felt. I am not prone to cramping, and by the end I could barely walk and my muscles were just spasming uncontrollably.
Ok, fast forward to the following week. The next day I called my doctor and moved my 6 month follow-up to the next week, and got blood work done (unfortunately he only tested my TSH). That week, I developed progressively worse carpal tunnel. I decided to double up on my thyroid dose, and after a few days of that, I then tripled it (so now I was taking 97.5mg (75 mcg T4/T3). I felt fine energy-wise (although was not running), but still had carpal tunnel. Then I went in to see my doctor. My TSH came to 2.94. He saw that and said my symptoms were probably not thyroid-related but that we could increase my dose by 16.25mg to see if that would help (I knew it wouldn't because I was already taking more than that but I didn't want to say that, and I started second-guessing myself that I was hypo). So I dropped my dose down to 65 mg, then back to 32.5mg. Well a few days later my carpal tunnel got so bad I was waking up in excruciating pain even wearing my braces. I was having shoulder impingement pain as well. I couldn't use my right arm in the morning for 30 mins after waking. I called my doctor asking for further testing and for him to test my free Ts. I did that bloodwork and it came out to TSH 2.58, free T4 0.71 ng/dL [0.6-1.6], free T3 3.59 pg/mL [2.39-6.79]. Seeing that my T4 was on the low end and T3 not super high, I figured that confirmed I was having hypo symptoms, even though they were technically within normal. So I started taking the 97.5mg dose of thyroid again. That weekend I upped my dose, I still felt terrible. I had a horrible run, couldn't move after, my whole body ached, and by Saturday evening I couldn't lift my right arm due to the shoulder impingement. I felt the same Sunday. But Monday (day of three of higher dose), I was SO much better.
Well my doctor looked at my results on Wednesday and said, "Your T3 is excellent." When I protested, he said rather condescendingly, "I've been doing this 30 years." Mind you, he's not an endo, he's a naturopath MD. I argued with him until he agreed to up my dose to 81.25mg. I knew this would not eliminate my musculoskeletal issues, but figured it was at least a move in the right direction. (note: he also tested for RA antibodies and sed rate and that was normal, and I don't have any joint tenderness)
I've still been taking 97.5mg dose this week, but won't be able to continue this once I run out of the extra Rxs from dosage changes. Still have carpal tunnel and morning stiffness, but my arm got better throughout the week, and then Thursday, I had a great run. However, today (Friday), I suddenly developed this shoulder impingement really bad again where I can't lift my arm. I'm thinking somehow running is triggering it, but I've never had a shoulder problem before.
Ok, so now for my question. I cannot think of any possible thing this could be other than hypothyroidism. I've scoured the internet and scientific papers for anything at all. But I'm just confused by how suddenly my symptoms worsened, and how my levels are not super low, but even tripling my dose hasn't completely alleviated my symptoms when I was great on a low dose for a year. I'm seeing a new primary care soon and am going to make an appt with an endo instead of continuing to see my current doctor who I'm really p*ssed with. But this will all take time (the endo I'm planning on takes months to get into), and I'm just curious if anyone has any insight into this or has experienced something similar. I'm nervous that I'm going to have to drop down to 81.25mg again and that I'm just going to be miserable, and that when we test my levels again they will be higher, but that I will still be having symptoms, and so my doctor will not listen to me. I know people say that it takes time to have symptom relief with dosage changes, but in my experience it seems like it happens very quickly. Like when I first started on the NatureThroid, I was almost completely better in a week. Is it normal to feel changes so quickly? And does anyone have experience with exercise worsening symptoms - like maybe free Ts are lowish and then exercise is an added stress that sort of depletes the body if it's not able to compensate with normal thyroid function? I'm not completely sure of the biochemistry (I don't know that anyone is actually), so I'm just kind of postulating.
About 4 years or so ago I had a relapse in the left upper leg and thigh. Recently I have been under quite a bit of stress... since this.morning I woke up with more severe pain in left that is now going down my whole leg into my little toe and the toe next to it... I have been taking 7.5mg vicodin twice daily since the last relapse that helped me out alot to function.... I was transferred to a pain specialist who said that is was not my ms cause this problem ( I have had 3 docs) tell me it was due to my ms relapse previously now I am scared and am lost as to what to do. As the day has progressed on I can barely even walk or put weight on my left leg?
View 4 RepliesI don't know where to start really but I'll give it a go. This may end up all over the place so I’ll apologise now.
6 years ago I was diagnosed with Celiac Disease. 3 years ago I had a fall trying to take my jeans off and had pains in my left wrist. I never had a diagnosis for the pains. I was given a few steroid injections and splint treatment and eventually the pains stopped.
Whilst I was pregnant with my daughter last year, I developed SPD (where the pelvis loosens too much during pregnancy) and ended up being on crutches for the last month of my pregnancy. I had a traumatic delivery with my little monster and ended up with an emergency c section. I was still on crutches for about 2 weeks after her birth and then seemed to end up using her pram as a support whilst we were out and about. If I take her out and about on my own I have to take her buggy as I can't lift her pram in and out of the boot (it's only double the weight of the buggy!) The longest I can stand holding her is 10 minutes before I'm in agony with my back, pelvis, ankles and feet.
Continuing from her arrival I have been getting the pains in my left wrist again and I'm now randomly getting them in my right wrist and the insides of my elbows too. I have even had to remove my wedding ring on the odd day because that causes pains in my finger. My daughter is now 10 months old and I am still getting the pains around my pelvis and back. I struggle to get comfortable at night laying on both sides and wake in agony with my neck and shoulders. I'm also waking during the night with the loss of sensation in my hands and/or pins and needles feeling. During pregnancy and now I get pains in my ankles and feet (I was in and out of hospital at the end of pregnancy over pre-eclampsia fears) to the point where I can only walk around for a maximum of an hour before I'm in agony. Fairly recently I've been getting pains in my jaw where no matter how I try to "rest" it, it hurts. I was given a mouth guard a few years ago as my dentist felt I was grinding my teeth during my sleep.
I should probably also mention that I have been diagnosed with Post Natal Depression (PND) and have been put on a low dose of Fluoxetine. I recently went to see one of our GPs as my hubby was quite worried about the fatigue I have been struggling with. I can't get through the day without feeling tired. Come an hour or so after lunch I have to summon up all the energy I've got to continue with my day, I just don't seem to have the energy to do much at all anymore. The GP just said it's probably a side effect of the anti-depressants and wasn't worried about it. I haven't mentioned anything else as I just feel like I'm over reacting. Just typing this out I've got aches and pains going through my fingers and wrists.
I had been receiving physio on my back from a fantastic therapist, but at the end of my maternity leave we were moved to a new unit. I went to see the physio at my new unit and had an awful session. She basically turned round and told me the only way my back was going to get fixed is loose weight, get back in the gym and get on with things. Not really what someone with PND needs to hear on top of everything else that they're dealing with. I didn't go into any further details about all the other problems I've been having as I just wanted to get out of there as quick as possible. This was 3 months ago and I haven't been back since.
My other concern is that I’m in the RAF. I still have just under 7 years left to serve until I reach my 22 year exit point. I just can't help think that if I do have this condition then I could end up being medically discharged. I wouldn't know what to do if I was. The RAF is all I've ever known, I joined when I was 16.
Have had hypothyroidism for 10 yrs. 2 yrs ago started with lots of joint/pain/tenderness and extreme tiredness. Had blood tests to check thyroid function - told that my symptoms were because I was on too high a dose of levothyroxine (125mcg). Told to reduce to (100mcg). Done this. Symptoms lot worse now and just been diagnosed as having fibromyalgia but I am so tired etc. and my symptoms are very much like when I was hypo and was awaiting a diagnosis - very dry skin, hair loss etc. (I have no record of my function test results so I cannot gauge what the pattern has been) Anyone else who has hypo and has been diagnosed with fibromyalgia? I cannot help but wonder if my symptoms are more to do with inadequate treatment for hypothyroid than fibromyalgia. Any ideas please?
View 1 RepliesI have these symptoms for over a year and each time it's a little different.
1. I get burning back of head usually back of left side neck at the base of my head then it goes up to my top of head.
2. I get dizzy or drunk like feeling, usually with a bowel movement.
3. confused feeling, lots of gas.
4. My back of the left side between my should blade and spine has a constant pain.
5. I crack in weird places I never used to. Example, the back of my head makes a clicking noise. Sometimes my chest will pop. 5. Burning in my abdomen, sometimes.
6. Pain by my heart or breathing, usually when I have to poop or pee.
7. Feeling like I have poor circulation when I sleep or awake in the morning. I will often wake up because of numb body parts.
8. jaw pain or jaw burning.
9. I will get like heat or burning in chest to face then, I sometimes break out in a rash? I get red bumps on my skin, often. This comes usually with my hot face feeling. It kind of prickly.
10. tingling in hands of both. 11. I get weird beating or heart beat beats faster sometimes.
12. I feel nauseous when I drink water, often. Or when have to poop, sometimes.
13. short of breath at times.
14. Floaters in the eyes.
15. head pressure or eye pressure.
16. Tired arms, usually left arm.
17. If I push on my chest with my fingers at the right time, it will hurt so bad MORE than normal with just a push.
18. I bruise so easily on my legs.
19. twitching in different areas more than norm.
20. I find pain in certain area of my body that should not hurt.
21. crawling skin on head at times and, muscles moving or slightly tightening for no reason on my upper body.
22. Tooth pain all of a sudden, then goes.
23. I feel different in my mind.
I have been to the E.R. a lot, it's annoying. They usually do not find anything wrong. I went to my Doctor she said nerves and I have ibs irritable bowel. I have a heart ultrasound looks good. I have bad tooth decay. I had a bad tooth infection 1 year or 2 ago. I used to drink a lot of energy drinks and WAS addicted to painkillers for about a year. All my basic blood work came back normal. I had an allergy test my Doctor said I don't have any. Of course I was diagnosed with anxiety. I say of course because, it seems like a trend that most people have.
Does anyone have any coping strategies that they could share with me. I have to have a cleaner because I'm too exhausted to even wash my clothes and a carer to shower me. My body is killing me with pain from top to bottom,especially in my back. The pain relief isn't working. I feel like bursting into tears. I can't go on like this any more.
View 3 RepliesI was looking for some help a couple of weeks ago i felt really ill like i was gonna get the flu aching all over only lasted about a day and a half but last weekend the same thing happened again was in tears with the pains and it lasted about 2 and a half days this time but now when i have the chance to get to docs i feel fine but am worrying its gonna happen again.
View 14 RepliesFor the past year I have had what appears to be fibromyalgia. I have had bad luck getting info from doctors so I am wondering what others who have a diagnosis might share.
View 14 RepliesI have been ill for around 4 years, mainly with persistent fatigue, episodes of intense sleepiness and episodes of lightheadedness on exertion. I have had probably hundreds of blood tests that have ruled out everything from thyroid to diabetes to iron etc etc. I have also had sleep apnea ruled out. I went to a rheumatologist yesterday as I have coeliac disease (which is under control) and wanted to rule out the possibility of other autoimmune conditions. Anyway the rheumatologist prescribed me vitamin D tablets as I am vitamin D deficient but he said if that didn't improve things his next option would be fibromyalgia. However (and I told him this) I don't have any pain! None! I was under the impression you can't have fibromyalgia without pain? I have already been to see an ME/CFS specialist and chronic fatigue syndrome was ruled out as I don't have enough other symptoms, ie I have fatigue but no memory/concentration problems, I don't have periods of feeling worse after periods of activity etc.
Am I right in thinking that I don't have fibromyalgia?
I've been on LDN for 2 weeks now. Started at 2,5mg increasing 0,5 a week, now at 3,5. I see some improvement. Anyone's taking it?
View 35 RepliesI have been taking Prednisolone now for 6 weeks now for Fibromyalgia and i have been fine with every thing, but there is one problem i have been having and that is sweating very badly iys like my whole body is like a tap it happens as soon as i get warm or when i am doing housework or even walking the dog.
View 3 RepliesJust been diagnosed with sarcoidosis of both lungs. Also have Fibromyalgia, Asthma and various other medical problems.
Had bronchoscopy and biopsies on Tuesday, felt every one taken from my right lung was in complete agony. Had x-ray 2 hours later and was told there was no pneumothorax and sent home.
On Wednesday I was in a lot of pain, but as I was seeing my consultant on Friday decided to wait to see him and it had subsided somewhat by then. Told him about the pain and he sent me for another chest x-ray which confirmed I had a pneumothorax, which he said would heal on its own.
I have to go back next week for another x-ray to see if it has healed.
He said that he wouldn't prescribe steroids at the moment and will be sending me for another lung function test in the next 3-4 months to see how things are going.
Just feeling very tired and slight pain from the pneumothorax.
I was just diagnosed with fibromyalgia. I have 16 of the 18 tender points, I'm tired, I have headaches, my muscles and joints ache and, occasionally, my fingers and toes get tingly. Oh, and I'm cold all the time. The only actual test I had done was a blood test, which came back perfect. The problem is, my lymph nodes are sore. Not swollen, really, just sore. My doc told me it's from the fibro, but I'm not finding any info to support this online. Also, sometimes I wake up with a headache. Is this normal? I should add, my left side feels IDENTICAL to my right. The pain, lymph node soreness, etc...It's all perfectly symmetrical. Is this normal for fibro? I am 36 years old. I would really appreciate any advice from someone who actually HAS fibromyalgia. My friends/family think I must be dying with all these symptoms, and that fibro can't really cause so much discomfort. My doctor, who is generally on top of things, is certain it's fibromyalgia. He said the tender points are what really tipped it off for him. I should add...this is causing me a lot of anxiety which seems to be making the symptoms worse.
View 1 RepliesI'm 30 years old and have suffered back pain and knee pain to an almost debilitating stage and the fatigue can be immense. I've had this since I was 17 ish. Quite often out of nowhere my knees will 'pop' or 'crack'. This can be when I'm walking, starting to sit, try to kneel or even stand still! Sometimes the pain is horrendous. I've also noticed my back has become less flexible over time (in fact my whole body). My calves feel heavy and my feet hurt like crazy. I find it hard to sit for very long without my spine hurting. My wife has tried massaging my back, but she hates it because she sees the pain I'm in. I have been to a Chiropractor, but I seemed only to get worse! I have been to the Dr and they seem to only want to look at one thing at a time rather than collectively. However, I do get some violent jolts or shakes which has been diagnosed as Myoclonus. It has been suggested by one Dr that I may have Fibromyalgia, however, I read through the literature and although some of it sounds familiar I'm not so convinced. By chance I then read an article in my local newspaper drumming up awareness of AS. I'd never heard of this before so I googled it and I would say the symptoms described struck a chord with me. I'm yet to discuss this with my Dr. Has anyone else found the same awkwardness in regards to getting to the bottom of what their suffering from? I'm convinced my mother also had it, although it was never confirmed. I can remember how much of a struggle daily life was for her. One Dr even tried telling her she was a bored housewife and that she needed to get out of the house more! Unbelievable. Anyway thanks for reading this, just trying to build up more of a picture of what it is I have :'
View 4 RepliesNow my husband has been diagnosed with fibromyalgia and is taking steroids. The pain in his legs is eased but he sweats all night. I have sent for
Dripose which is for fatigue. He is still taking bp pills but not statins. He is diabetic.
So yesterday I went to see the RA and it appeared as if he cared. He explained that I was severe with FIBRO and that there isn't too much that he could do. He upped my LYRICA to 200 mg (not sure why as it gives me more issues than taking pain away) . He also suggested that I go to a Fibro Clinic in UF , some where in the panhandle of Florida, I can not do it (Finances, Insurance, I don't drive because of LYRICA) . He also gave me a referral for SUBOXONE This is a medicine that they usually give for people who have had problems with pain pills.The RA explained how he just read an article in how this could help me. Has any one else experienced this? Did it work?
View 2 RepliesSelenium deficiency is considered by some naturopathic doctors the key to Fibromyalgia and CFS.
Some even relate it with animal “Nutritional muscular dystrophy” AKA “White muscle disease”.
Should we go to the vet?
Fibro is a like a box of dark chocolate, each centered chocolate has a different symptom filling. And leaves a nasty taste in your mouth.
FIBRO FOG MISTY CENTRE
PAIN HOT CHILLI CENTRE
MIGRAINE
LEG PAIN
BACK PAIN
SHOULDER PAIN
NECK PAIN
HIP PAIN
TINNITUS
EARACHE
JAW ACHE
NUMBNESS
PINS NEEDLES
CHEST PAIN
BURNING
SORE THROAT
AND MANY MORE NEW SYMPTOM CENTRES TO COME