Hello my Fibro family. I do not know what is going on with my body? I’m looking at getting a second opinion to make sure I don’t have Stiff Person’s Syndrome. It’s a pretty awful autoimmune disorder and if I have it, I need to act fast to get treatment. My neurologist says I don’t have it. Also, I have more blood tests taken. My ANA was positive. And another ANA test said it was homogeneous? I could have that wrong. I don’t feel like my rheumatologist likes me. When I see her, she sits in front of her computer. She doesn’t make eye contact. I don’t feel like she’s invested in my care especially when she said there’s nothing more I can do for you. Different doctors have ordered different labs. I’m the one who is coordinating my care. I want a doctor to step up to the plate and not have me be the communicator between the doctors. I kind of want to scream “ I am getting worse every day. I’m not sleeping because of pain. I wake up in pain. I think I’m dying. I want someone to care. I’m tired and fatigued. I can’t continue living this way. I don’t have friends or family who can help me. I’m wondering if I should just stop trying to figure things out. I’m not trying to be morbid. I’m not going to end my life prematurely. I’m just wondering if I should just let whatever happens, happen. I know in my heart that doctors are missing “ something “. They are not doing it intentionally. My body hurts sooooooo much. My mobility is getting worse by the week. I can’t drive to like a Mayo Clinic type hospital because I can only, maybe, drive for 45 minutes? I’m trying not to write this in a” feel sorry for me” way. I’m trying to write it like “ what do you think”? Anyone have any ideas? Anyone have a similar story? If so, what did you do?
Did you get the COVID vaccine? I got the Madera vaccine and have been in pain ever since. Had I known that it would cause such a long-term flare up, I would have skipped it.
Hi Kay, I had the Pfizer COVID vaccines. I wonder if that’s why I’m experiencing non stop pain. I’m miserable. Did you call the manufacturer to see if other people with fibromyalgia had similar symptoms? I might do that. I appreciate you bringing that to my attention. I’m really sorry you’re in so much pain. I wish I could make it all go away.
I am so sorry you are having such a rough time. When you mentioned the doctor just looks at the screen and not make eye contact with you. That happens to me and most others, what I do when I see a medical person and if they do not make eye contact because they are looking at the screen, I just sit there and not say anything until they turn and look at me direct only then do I say why I am there. I have done this several times and in the end if I see the same person they do make eye contact first before looking at the screen.
Praying for you.
Hi there Freedom,
I’ve always found a 2nd opinion to be good, not just to make sure, but also to give me new ideas.
I wdnt nec assume a doc who prefers to look at the computer means it personally. I’d think they prefer the technical part of their job to the soft skill part, or feel better at it. In your case combined with us being quite a bit of a challenge for them, too hard (as my nice new dermatologist put it: a challenge for both sides). My rheumatologists didn’t help me at all and I know that is the reason: They haven’t a clue. My GP can’t help me much either, I have to make suggestions and co-ordinate and ask. It’s my sleep lab psychiatrist of all who tries to think and help… But he doesn’t co-ordinate/communicate either. Docs aren’t trained and most aren’t willing to think holistically. We either have to go to functional docs, alternative practitioners, other kinds of medicine like TCM (and even those often don’t manage) or good holistic physiotherapists. And if they are not enough (mine aren’t, altho some of them are brilliant), if they are still missing something, I need to read and write, analyze and test things (supps & herbs) out. I still haven’t watched every youtube video on fibromyalgia or similar, read and digested every good webpage, read every helpful study. But in my experience (e.g. GABA) it isn’t much about finding something like a diagnosis or bloods that docs have missed any more, because there are 1000s of possibilities. It’s rather about following up on inklings which of the 100s of treatments I haven’t tried might be helpful for me, or even have tried before, but praps in a wrong way. More and more also watching out that I keep the doses/stints small/short or at least am very wary about side effects.
OTOH if it were the missing link in a known diagnosis I am looking for, then the way would be to prepare my data (bloods etc.) and communicate them to people on the web - not my docs and look for ideas there first. With ideas from the web I’d go back to docs who are prepared to think and ask them for their opinion. Since you are still unsure about Stiff Person’s Syndrome I’d read all I can find and talk to people who have the syndrome or thought they had it, to compare, ask for their experiences, what helped them. The even rarer possibility is that there is something, but no-one has seen it yet, even rarer than SPS. Then I’d be back to testing all kinds of safe treatments.
“Screaming” may be a good way of letting off steam about this feeling of powerlessness. For a short time anyway. A groan or shout. Any time I feel like this I look for counsellors. But talking on the forums helps me a lot too, now I’ve found them. I personally will never stop trying to figure things out or letting whatever happens, happen, even tho there have been weeks like that. If looking for inner happiness instead of health were a solution that might be a way, but I know from experience that if I haven’t got a certain grip on my body, my mind cannot overpower that, however much I try.
As I don’t drive at all and live in a place with lots of public transport I’m not sure if there are any alternatives for someone to drive you (car, bus, train etc.), or drive in short stints of 20 mins, making sure you can rest from the driving in between. Deciding what it is that makes it hard for me to drive/get driven and getting that improved.
The vaccine idea’d mean it started with the vaccine, that’d be something a pain diary’d show. 100s of experiences of pain of fibromites after vaccine I’ve read show that 90% have pain for up to about 3 or 4 days, with not that much of a difference according to which one of them. But I’m pretty sure I’m so hypersensitive that I’d have big problems for 1-2 months, so I’m not getting a vaccine, at least not yet. Prefer keeping distanced from people and always wear a mask near most of them.
I like @rosebud74’s idea of waiting a while before I speak till a doc looks at me. I don’t care that much as long as I get a good enough answer, but if I don’t I use that trick or just get a bit more insistent about my question…
Hope it gets a bit better soon!
Thank you Rosebud and JayCS. What do you do when the doctor sits in front of the computer and asks you questions while continuing to look at the computer, never making eye contact?
Actually, I value it greatly, assuming they do it cos they want to transfer an accurate picture of my problems to ‘paper’ to be able to analyze it better, to try to understand, and not be distracted too much by my outer appearance, which is better analyzed if nec by a direct examination.
Many of them do it “to me”. Those that don’t often accordingly don’t bother with a report either. Or need me to remind them of a lot of things the next time. Some of them that do write brilliant reports, part of what they write is after I have left tho.
After my first GP retired the following practice sent me my file as I didn’t want to stay with them (as it was a large group practice and I prefer small personal ones). It was extremely difficult to read, seemed like gibberish, like this: ti qwar evvry digghicu.t (= it was very difficult), because he cdnt type. It also omitted important things like my flu 2011 having been swine flu, probably the general trigger of my fibro. I had to carefully reconstruct things like that from memory, remembering when/that he had asked me if I wanted it tested and told me the result, but only after I asked it, it wasn’t important to him…
Main thing for me is that I get answers to all my questions and am not pressured or hurried out. The best time for them to write, esp. if they have a bad memory or I have loads of confusing symptoms is when they are asking me questions. When I am asking questions myself that’s the time where I’d prefer them to make eye contact, tho not nec. I’m not sure if I’d have the chuzpe to directly ask for eye contact, even tho the experiences of having been thru 45+ in such a short time means I don’t let myself be fobbed off. I think I’d use other tricks like pointing to parts of my body and asking them to look (‘if you’d like to look here’).
I had several reasons for having changed docs. My first endocrinologist didn’t look at me much at all, and I was surprised when after several appointments she then did, to candidly admit that there were things that might be the case but her training was too long time ago. But the reason I’ll never go there again if I can help it is because it took months to get results, she wasn’t contactable in any way. Other endocrinologists were pretty far away, but then I decided to go for ones in hospitals who are doing additional private practice, there was one even nearby - he didn’t find anything, but he was thorough… Hope some of that helps…
We have quite a bit in common. First, I would get a new doctor! Where are you from? Maybe someone can direct you to a good one in your area.
Could you have Lyme? I have/had and was treated for chronic lyme. It took 12 years to get a diagnosis and I had all the symptoms you do and still left with many of them that is now called Fibromyalgia. I had to do this fight on my own. I have no support and I’m still fighting every day and its tiring. If it is Lyme and you’ve had it a while it will be difficult to diagnose. I can help you with that if you decide to look into it. God bless! I’d be interested in PM-ing each other if you’d like.
I want to say I think it’s amazing that you’re advocating for yourself. You have to! Our healthcare is broken. I saw 8 Rheumatologist in the USA. I traveled from Texas, New Mexico, and the university of John’s Hopkins. They said “it’s just fibromyalgia. Go home & exercise and seek pain management. I did. They gave me a prescription for nucynta. It’s like a extremely strong tramadol that also has some cymbalta properties. It’s a very expensive opioid. Luckily my insurance covers most of it & the rest the manufacturer covers. My copay is $35 a month, but it’s worth it to me. A little bit later I asked one of my friends in Monterrey Mexico to find me a specialist. He’s a OBGYN in Mexico so he referred me to a rheumatologist there. This man got my clinical notes and said, “it looks like they did everything they could, but all missed the very last step”. He sends me for an ultrasound of my joints. I go back to his office a couple of days later and he tells me I have peripheral Spondylarthritis. He said I have secondary fibromyalgia. Meaning the fibromyalgia plays off of the spondylarthritis. He sends me home with a prescription for sulfasalazine and he’s been awesome ever since. I can text him anytime. I have had nothing but amazing care and it only cost me $60USD for his visit. His name is Dr. Alejandro Garza-Alpirez. He is a professor at Monterrey tech in immunology. He also works at hospital Zambrano which is Mexico’s Mayo Clinic per say. No, i wasn’t scared. I was basically in the Beverly Hills of Mexico. Outside the hospital is this place called fashion drive. It has all major luxury brand clothing (Gucci, channel, etc…) . There’s also a Bentley dealership right there. The suburb is called San Pedro Garza García . It’s one of the wealthiest cities in Latin America. The hospital was nicer than any hospital I’ve seen here in Texas . You can google his name and find his info if you’re interested. The doctor that preformed my ultrasound was Dra. Ana Laura Alavarez Del Castillo Araujo. She was awesome as well. A lot of the American teachings come from European data. Latin America shares there data but the docs here believe they’re superior.. If you don’t have any luck with your second opinion I’d consider making a trip to Monterrey.
Wow, everyone is giving me great ideas! Thank you. JayCS, have you ever had TCM? My psychiatrist mentioned it last week for the treatment of fibromyalgia. He said studies have shown it is quite effective. I was a nurse for over 20 years. I know quite a lot regarding diseases/ anatomy etc. But I’m perplexed. I feel these bumps? lumps? in some of my muscles. Especially my arms and legs. I know for sure it is muscle versus skin. I find them because the area will hurt and I’ll rub the area with my hand and I’ll notice it’s slightly raised. I have been noticing more bruises on my arms and legs too. I don’t recall bumping into anything. And my tendons and ligaments hurt a lot! Ah! I barely touch a painful area and I jump! Almost every morning, I wake up and there’s significant pain on both sides of my elbow. I’m sure is some type of connective tissue versus bone. Just now, I had a sharp pain on top of my thigh where there is a raised area. You can’t see it but you can feel it. The pain was quick, only lasting a second or two. Mmmmmmmmm.
Hi Freedom! Well, actually, yes, I’ve tried quite a bit of TCM: acupuncture, cupping, in the past (not fibro) herbal teas, and the acupressure which is now my mainstay (apart from GABA) is very influenced by TCM. That’s why I sometimes write “TCM/acupressure”. My acupressurist helps me lots for these muscle problems. In my case these many pain areas are not palpable as lumps, but the symptoms are exactly as you describe, and it’s the tendons and ligaments more than the muscles. According to her theory they are caused by inner or outer scarring due to accidents or similar ‘incidents’ - I don’t really care if that is true - it helps. Using ear acupressure and feeling these areas she can find out what is necessary, but often like in all our fibro-treatment-efforts she has to try things out too and sometimes asks me what I think might be right, also needing my feedback what is happening whilst she’s doing it. But when one thing isn’t right she’s always got another trick up her sleeve.
The studies on fibro & TCM I’ve found are cautiously positive, one central one from 2010 (Cao et al.) saying “TCM therapies appear to be effective for treating FM. However, further large, rigorously designed trials are warranted because of insufficient methodological rigor in the included trials.” https://pubmed.ncbi.nlm.nih.gov/20423209
They say “There were no serious adverse effects reported that were related to TCM therapies in these trials”: “Funnily” I’d say that I think I’m the only person on earth that reacts negatively with a great deal of pain during and after acupuncture, 9x1 and 1x1. However my acupressurist had told me cold showering can neutralize acupressure so I did that the last time and it also neutralized the acupuncture pain. Cupping didn’t help me at all, it was irritating for my skin. And trying their herbs is a problem for me, because the teas need to be drunken hot, which hurts my stomach. But I’d always recommend to try all/any of these as these problems last much shorter than any of our brilliant modern medicines…
Oh, by the way the hurting you are describing are often things which can be ‘trigger pointed’, i.e. pressed till the pain stops (at full or 50% pain), but I find it only occasionally helpful when I do that myself. A softer way is the Jones technique, which means you press them, but them move your body so that it no longer hurts and then hold that a while. The pain in your elbows are things I often have, where twist-stretching usually helps me and doesn’t harm me.